Thursday, October 20, 2011

This is the picture Maya drew for Cicily on her birthday. She titled it Cicily glo's. When we asked her about it she said that it shows how Cicily glows in the darkness. It's so perfect. I love it.
(Note on the details: Cis is sitting in her chair and wearing a purple polka dot dress)

Monday, October 3, 2011

If big smiles and lots of laughs are any indication, Cicily had a GREAT 5th Birthday!!!!!

It started over the weekend with a card in the mail from Cicily's Wish Granters. Cis always has to open one piece of mail every day. So, she was giddy to have her own BIG piece of mail from her wish granters to open! Then, as you can see she was so excited to recieve a birthday card with polka dots, chickens, and music. There couldn't be a more perfect card for Cicily! Thank you Liz, Czerina, and Michael!

As soon as she woke up, it was birthday present time! Michelle gave her a polka-dot bag bursting with Dora fun!

Maya and Sophie gave Cicily their Dora presents.

This kitchen was a big hit from Mom and Dad! Cicily has been cooking delicious food for all of us all day! (Thanks Michelle for finding it on Craigslist and picking it up for us.) Oh, and the dress Cicily got to go pick out this morning. Dad talked to her about presents last night and she said dress. Mom hadn't bought a dress for her birthday this year - oops. So, we went to the store this morning, she liked choosing her own birthday dress!

Birthday party at school! I'm not sure if Sophie or Cicily loved this more. Cis wanted cookies to share with her friends at school. She was talking about it all day yesterday! You can't see it in the picture too well, but she has a cute polka-dot 5 crown on from her teachers.

When she came home from school, Tami had this BIG surprise for her. A larger than life size Minnie Mouse! Cis was stunned when she first saw her, and loves her of course! She had fun flopping and snuggling with Minnie all evening!

Grandma DeEtte came to bring a card, wish a happy birthday and give Cis a hug. Cicily was showing her she's 5. She can sign 5 and 1 the best, so this is a good year to ask Cis how old she is! Grandma can't wait to come back tomorrow night to babysit, give Cis her present, and play with all the fun new toys!

We asked Cicily what she wanted to do at night for her birthday and she wanted a Cicily's Birthday Family Night Celebration. We used her new markers from her teacher at church, Sara Willis, to make cards for Cis showing what we love about her. (Maya's idea) Cicily wanted cookies instead of cake, so we enjoyed cookies! And, we played and danced with all of her new toys.
After she was in bed, she got 2 surprise phone calls from her cousins to sing happy birthday. So we put her hearing aids back on for a beautiful Cesar "happy birthday", complete with "hot lava" of course! Then we put them back on a few minutes later for an adorable Max "happy birthday" solo. Cicily really loved both of them!
Thanks to so many people that love Cicily, she enjoyed another very happy birthday!

New to Cicily's blog? Read some FAQs about Cicily:

Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.